Living in their own world

Getting an education for autistic children is a daunting challenge for parents

Like most 5-year-old children, he loves to run around, yell, and make mischief. When he’s around his family, he’s likely to jump into one of his parent’s laps and dissolve into giggles. Paul seems like he could be a poster child for healthy kids.

PHOTO BY STEVE E. MILLER

EDUCATION : Jill Heuer is in charge of special education in the county. She coordinates programs in 10 school districts.

But if you spend a little more time with Paul, you begin to realize that he’s different. He usually runs and hides in a corner when someone new comes around. If you try to talk to him, he’ll turn away. He rarely looks at anyone.

“He lives in his own world,” said Kate O’Brian, his mother. “He doesn’t really acknowledge me for weeks at time.”

Paul has never managed toilet training and can’t use utensils with any points or edges; he will stab himself in the face even with a plastic spoon. His house is strangely bare of toys for a home with three children. Unless he’s closely monitored, Paul will use most toys to hurt himself or his siblings.

“Sometimes I am up for hours just crying,” said a tired-looking O’Brian. “What will happen if something happens to me? Who will take care of him?”

Paul is severely autistic. Autism, according to the Autism Society of America, is a complex developmental disability that typically appears during the first three years of life and affects a person’s ability to communicate and interact with others. No one knows if it’s a genetic or environmental disease, and there’s no cure.

Paul will soon be one of more than 50,000 autistic children in the California school system. O’Brian likes the special education kindergarten her son attends in Northern Los Angeles, but she’ll be moving to San Luis Obispo at the end of the year and wonders what schools will be like here. She fears government cuts will eventually hurt special education, and therefore forever affect Paul’s chances of getting any kind of help from the educational system.

O’Brian’s fears about a reduction in special education funding are probably unfounded, said Julian Crocker, superintendent of schools for SLO County. Special education—instruction for physically or mentally handicapped children whose needs can’t be met in an ordinary classroom—is a federally mandated entitlement that can’t be reduced.

“We’re obligated to maintain funding,” Crocker explained. “And if we don’t, we can lose out on federal funding.”

Mandatory funding for children with special needs has been around since President Jerry Ford signed the first federal special education bill in 1975. The bill mandated a continuous and steady level of special education funding with the federal government providing 40 percent of the cost. Unfortunately, education officials say the feds have never come close to that amount of funding.

Federal money usually accounts for around 10 to 12 percent of SLO County’s special education budget, though it was recently boosted to 20 percent by stimulus money. That level of funding will decline in September when the final stimulus money runs out.

State support, along with federal money, pays for two-thirds of special education funding. Local school districts have to pay the rest out of general funds. Since special education can’t be reduced when budget cuts come, general education funding bears the brunt.

Crocker, however, is worried about the future.

“We’re very concerned that federal funding could be reduced,” Crocker said. “They are talking about cutting entitlements [in Washington, D.C.], and this funding is an entitlement.”

Jill Heuer is in charge of special education for the county. She’s the director of the SLO Special Education Local Plan Area, and she distributes funding among 10 school districts. Her office regulates procedures on how schools deal with children with special needs.

There are more than 4,000 children in the county’s Special Education program, and a little more than 300 of those have autism. A student study team consisting of teachers and behavioral experts evaluates new students who are believed to have a disability. They will develop an individual education plan for the student.

“Each plan is different,” Heuer said. “There is a saying with autistic kids: When you’ve met one kid with autism, you’ve met one kid with autism. Each one is completely different.”

If parents don’t like the individual education plan, they can appeal and go to mediation, a process Heuer’s office handles. If the parents still aren’t satisfied, they can appeal to get an administrative hearing in the state judicial system.

Overall, most parents with autistic children seem to be satisfied with the education system in the county, said Rebecca D’Ornellas, a parent of an autistic teen. D’Ornellas also runs a North County autism support group.

“Of course, not every parent’s experience is the same,” D’Ornellas said. “I think it’s easier for a child who has a relatively high level of functioning.”

She’s been a part of the support group for five years and has seen the state make drastic cutbacks in social services for disabled children. The schools seemed to have maintained their funding.

It takes a concerted effort to deal with an autistic child and learn to navigate the system, she said.

“You have to do the learning and research,” D’Ornellas explained. “We have to understand how they learn, and we have to speak for our kids, because they can’t.”